Under federal Medicaid guidelines, states are required to provide “comprehensive and preventative” health care services for children under the age of 21. Medicaid benefits are handled through TennCare in Tennessee.

Carlene Beard, an LPN, administers a nebulizer while providing treatment for Tristen Shackelford at his home on February 16, 2018.(Photo: Alan Poizner / For The Tennessean)

Patients considered adults under the agency’s policies require different criteria for coverage of full-time, in-home private duty nursing.

“Healthcare for people like Tristen has to be an evolving, flexible accommodation to each person,” Hoolhorst said. “It’s not cookie cutter.”

Not enough help

Shackelford needs constant attention to help him breathe, eat, cough, move and more. Since he is not ventilator dependent, nor does he have a tracheostomy, he is not eligible for the program that would cover that 24/7 supervision.

Private duty nursing is termed “optional” in Medicaid and TennCare policies, indicating that the state can choose where (not whether) the care is funded — at home, in a nursing facility or a hospital — based on cost-effectiveness.

Tennessee implemented a variant program in 2010 to help supplement in-home care for many receiving TennCare benefits to help keep people living in their communities while minimizing the toll on the taxpayer.

However, those services have expenditure caps that stop well below what some patients need.

In a state of limbo

Hoolhorst started the process to figure out how she’d get help for Shackelford well before his August 2017 birthday.

“We’ve always had to fight for what he’s needed and here we are again having to fight,” she said.

Carlene Beard, an LPN, reads a book with Tristen Shackelford while providing treatment to him at his home on February 16, 2018.(Photo: Alan Poizner / For The Tennessean)

Shackelford’s 24/7 care remains in place pending the decisions on the lawsuit and various appeals.

“You have parents that are willing to do this. How easy would it be for me to say go to a nursing home, go to a hospital? I’ve done this for 21 years, I’m willing to keep doing that," the mother said. I’m willing to have people in my home to keep him here.

"This is the only place he’s ever known,” Hoolhorst said.

Not everyone has a child, Hoolhorst knows, not everyone has her perspective.

The level of care Shackelford requires is comparable to the supervision needs of a 4-month-old child, she said.

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Rosemarie Roan adjusts a towel on her daughter Alison "Ally" Roan's wheelchair. Ally was born with Spastic Quadriplegic Cerebral Palsy and has been under nursing care since she was 5 years old. Roan has been under 24/7 nursing care for most of her life. When Roan turned 21 TennCare dropped her care from 24/7 to just 30 hours a week. Roan's family is fighting to keep her at home and not moves to a nursing care facility. (Photo: HELEN COMER/DNJ)

Nashville through and through

His favorite thing in the whole world, his mother says, is female country singers.

“He could watch the same 10 Shania Twain videos all day every day. He loves them,” she said.

He loves trips to restaurants and Target, enjoys music, animals, and going to school, his mother said.

“He deserves to live here for however long he lives,” she said. “You can’t put someone like Tristen into a nursing home. Just because they are disabled does not mean they shouldn’t continue to live in their life at home.”

Expensive but necessary

Shackelford would have to be in an intensive care unit to receive the same level of one-to-one care. There, he may be isolated or exposed to serious illnesses.

Coverage for adult inpatient hospital services is mandatory under Medicaid with no benefit limit.

“Even in a hospital, a nurse does not sit by each patient’s bedside 24 hours a day caring only for that patient,” TennCare’s then-director Darin Gordon wrote in an opinion piece published in The Tennessean in 2008, discussing the complexity of the policy change.

Gordon was explaining where the high cost of in-home care comes from, but he called attention to the exact fears parent like Hoolhorst deal with.

In-home private nursing was more than $300,000 per person, per year in 2009. Since that time, the growth rate for those costs are estimated to have increased 50 percent year over year, according to TennCare spokesperson Sarah Tanksley.

Carlene Beard, an LPN, works with Tristen Shackelford at his home on February 16, 2018.(Photo: Alan Poizner / For The Tennessean)

Shackelford’s exact coverage status is unclear due to the appeals, but in December he was offered coverage for 30 hours a week of skilled nursing and an additional 10 hours with a home health aide.

“I have to sleep,” his mother said. “He cannot be left alone, ever ... I'm not a medical professional.”

In January, a caseworker with the ECF Choices program said Shackleford may have been approved for $167,000 annually for care, equal to about 20.4 hours a day.

That is almost enough, Hoolhorst said, but not quite.

She would have to take over the management of the nursing staff under that program. The team of nurses would have to give up benefits, time off and more to agree to stay with the family to help them.

“They’re willing to move with us,” she said. “They love him, they want to take care of him. They’re willing to give that all up. I’m willing to do it.”

Cost to community

TennCare is taxpayer funded, and Tanskley is clear that the agency “takes seriously its responsibility to provide high quality, cost-effective healthcare” in a “fiscally sustainable way.”

“The hard decisions we are sometimes required to make regarding benefit limits mean that we can provide more services to a larger population of people,” she said.

Hoolhorst has no unkind words for anyone she’s talked to at TennCare.

“They’re doing their job, but that doesn’t work for people like Ally and Tristen. What you’re offering does not fit their life. For those few people, you have to make an exception,” she said.

Policy change

Right now, Hoolhorst and the Roans are focused on making sure their children get the care they need. In the long run, though, Hoolhorst hopes this exception could be the start of bigger change.

The lawsuit argues that moving Shackelford and Roan out of their homes would be discriminating against them under the Americans with Disabilities Act.

“There was a time when they didn’t cover kids like Tristen. Kids like Tristen were put in nursing homes or hidden away at home,” Hoolhorst said. “An American, whether you are 15 or 25, you should have the same benefits on Medicaid. You still have the right to thrive.”

Hoolhorst and Ally Roan’s mom Rosemarie Roan are members of a message group named “David vs. Goliath,” where other parents dealing with similar bureaucracy issues can share frustrations and inspirations.

Hoolhorst laughs a little when she talks about it.

“All these moms, all these others about to face this. They’re hoping we’ll be able to blaze the trail by the time they get here, all these other kids are about to face this, too,” she said.

Fighting for their lives

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Rosemarie Roan kisses her daughter Alison "Ally" Roan' on the forehead before moving her into the living room. Ally was born with Spastic Quadriplegic Cerebral Palsy and requires 24 hour care. HELEN COMER/DNJ

Alison "Ally" Roan who was born with Spastic Quadriplegic Cerebral Palsy reacts the family dog Bella climbs into her lap of as Rosemarie Roan her mother moves her into the living room and her sister Anna Roan, left moves items out of the way. HELEN COMER/DNJ

Alison "Ally" Roan, center was born with Spastic Quadriplegic Cerebral Palsy and has been under nursing care since she was 5 years old. Ally's family surrounds her mother Rosemarie Roan. The Roan family is fighting to keep Ally at home and not moved to a nursing care facility, after Ally's TennCare coverage was dropped from 24/7 around the clock nursing care to just 30 hours a week for home care. HELEN COMER/DNJ

Rosemarie Roan stands next to her daughter Alison "Ally" Roan was born with Spastic Quadriplegic Cerebral Palsy, an requires full nursing care. When Roan turned 21 TennCare dropped her care from 24/7 to just 30 hours a week. Roan's family is fighting to keep her at home and not moved to a nursing care facility. HELEN COMER/DNJ

LPN Tracey Hard attends to the needs of Alison "Ally" Roan, who was born with Spastic Quadriplegic Cerebral Palsy and has been under nursing care since she was 5 years old. Roan has been under 24/7 nursing care for most of her life. When Roan turned 21 TennCare dropped her care from 24/7 to just 30 hours a week. Roan's family is fighting to keep her at home and not moved to a nursing care facility. HELEN COMER/DNJ

Alison "Ally" Roan, who was born with Spastic Quadriplegic Cerebral Palsy and has been under nursing care since she was 5 years old. Roan has been under full nursing care for most of her life. When Roan turned 21 TennCare dropped her care from 24/7 to just 30 hours a week. Roan's family is fighting to keep her at home and not moved to a nursing care facility. HELEN COMER/DNJ

Robert Roan, left and Rosemarie Roan talk about their daughter Alison "Ally" Roan, who was born with Spastic Quadriplegic Cerebral Palsy and has been under nursing care since she was 5 years old. HELEN COMER/DNJ

Rosemarie Roan tells her daughter Alison "Ally" Roan' how much she loves her, while in the daughter's bedroom. Ally was born with Spastic Quadriplegic Cerebral Palsy and requires 24 hour nursing care. HELEN COMER/DNJ

Anna Roan, 16, braids her sister Alison "Ally" Roan's hair. Ally was born with Spastic Quadriplegic Cerebral Palsy and has been under around the clock nursing care most of her life. When Roan recently turned 21 TennCare dropped her care from 24/7 to just 30 hours a week. Roan's family is fighting to keep her at home and not moved to a nursing care facility. HELEN COMER/DNJ

Rosemarie Roan adjusts a towel on her daughter Alison "Ally" Roan's wheelchair. Ally was born with Spastic Quadriplegic Cerebral Palsy and has been under nursing care since she was 5 years old. Roan has been under 24/7 nursing care for most of her life. When Roan turned 21 TennCare dropped her care from 24/7 to just 30 hours a week. Roan's family is fighting to keep her at home and not moves to a nursing care facility. HELEN COMER/DNJ

Alison "Ally" Roan was born with Spastic Quadriplegic Cerebral Palsy and has been under nursing care since she was 5 years old and currently requires 24/7 nursing care. Ally's closet is filled with her medical supplies. HELEN COMER/DNJ

Alison "Ally" Roan was born with Spastic Quadriplegic Cerebral Palsy and has been under nursing care since she was 5 years old. Roan has been under 24/7 nursing care for most of her life. When Roan turned 21 TennCare dropped her care from 24/7 to just 30 hours a week. Roan's family is fighting to keep her at home and not moved to a nursing care facility. HELEN COMER/DNJ

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Ally Roan, the other plaintiff in the suit against TennCare, was rushed to the ICU on Feb. 13.

Even though she has 24/7 care and a loving family around her, she contracted lower right lobe aspiration pneumonia with some lung collapse and had to be put on a ventilator.

“We have turned the corner and she is making progress getting well, but when I asked the doctor if she was out of the woods he said, ‘she’ll never be out of the woods,’” her mother, Rosemarie Roan, said. “Each time she gets pneumonia it weakens her lungs.”

Rosemarie Roan tells her daughter Alison "Ally" Roan' how much she loves her, while in the daughter's bedroom. Ally was born with Spastic Quadriplegic Cerebral Palsy and requires 24 hour nursing care.(Photo: HELEN COMER/DNJ)

Ally's health is extremely fragile and can go from stable to life-threatening in a flash.

She has been hospitalized for more than a week and although she has been doing a lot better, they don’t know when they can bring her home.

Until then, the Roans have been making the trip to Vanderbilt as often as they can.

“Between my husband and I, someone has been with her the whole time. For me, that means calling in sick and finding a substitute to take over my classes. I go home wash clothes and repack and I’m back up here by her side,” Rosemarie Roan said.

Reach Mariah Timms at mtimms@dnj.com or 615-278-5164 and on Twitter @MariahTimms.

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Alison "Ally" Roan was born with Spastic Quadriplegic Cerebral Palsy. Her family has filed a lawsuit against TennCare to continute her 24/7 nursing coverage.
HELEN COMER/DNJ